I don’t know where to begin. I haven’t had the words to write this blog post for months on end. Did you wonder where I went? I’m so sorry that I was gone for so long. My world came undone. It unravelled right before my eyes. Life can change in an instant.
My husband Michael has terminal cancer.
I lost my ability to write for so very long. I couldn’t find a way to say the words out loud, let alone sharing it with thousands of people. And then the light bulb went off.
We can find the light in the darkness we call cancer.
This is our story. Click here to view it on YouTube :
We’d be honoured if you could please share this video. Share it on Facebook, Twitter… anywhere. Everywhere. We’re so very grateful for any shares that you can do. We hope that our journey will help make a positive difference in the lives of others. xoxoxo
Truth is, I had been wearing cement blogging boots. I stared at the blank page. I typed. Deleted. Cried.
How could I find the words? How do I say that the love of my life is dying? How do I begin to talk about what it feels like to slowly watch your life start to crumble? How do I describe how cancer can chip away at everything and anyone you have ever loved?
There are no words for that.
To tell you the truth, it even felt wrong to start a blog post with ….
Can we survive? Can we make it through it?
Cancer doesn’t give a shit if it unravels your life.
Cancer has no mercy.
Cancer terrorizes a body, no matter what the cost and irregardless of the obstacles.
Cancer doesn’t discriminate.
Cancer gets smarter.
Life gets shorter. Worries get bigger.
I hate cancer.
Please note: this blog post is sad and a complete departure from what I normally write. Please… if it is too much for you, come back another time for fun and inspiring blog posts. I’ll understand. xo
I suppose it’s only natural to stick cancer conversations inside a jar and open the lid for a fleeting moment. Like it isn’t there. We ignore it. Until we can’t.
Cancer causes us to re-evaluate our world. It makes us think about a lot of things. Deep meaningful things. Life. Legacy. Scary as shit things. Hospitals. Chemotherapy.
There was a time when I had a beautiful appreciation of chemotherapy. Sounds weird, right? It’s true. Chemotherapy saved Michael’s life a few years ago. You may remember it from these blog posts. I’ll be eternally grateful for how chemo literally brought him back from the brink of death.
Our chemo choice wasn’t a choice this time.
Chemo won’t save his life.
You better sit yourself down.
Michael was diagnosed 9 years ago with a one in a million cancer. His cancer journey has been both on and off chemotherapy. Chemo truly worked for a very long time.
Until it didn’t.
Recently, his lymphoma has metastasized into an even rarer cancer… a scarier than shit cancer… called leptomeningeal metastasis.
As if one-in-a-million wasn’t enough. Bloody hell.
Michaels lymphoma has now moved into his central nervous system. You know that place in the core of your body, where pretty much everything functions from? That place. If your body were a car, this would be your engine. It has metastasized into his cerebral spinal fluid, his spinal root nerves and on his brain.
It’s a poor prognosis. Most patients live up to 10 months with this kind of cancer. It makes me cry just to type the words. I know I still haven’t accepted it. Not sure that I ever will.
Is chemotherapy on cancer like a bandaid on a bullet wound?
Michael had chemo once a week for 7 weeks. The chemotherapy was injected directly into his cerebral spinal fluid. He had IV chemo in addition to the weekly intrathecal chemo. His treatment course was weekly chemo, plus chemo for 3 days straight, possibly moving up to 5 days of treatment per month. The 5 day chemo regime would have been so intense, he would’ve needed to be admitted into the hospital for a week of close monitoring. That would have meant chemo weekly and for 5 days straight, every month. He would have been on antibiotics for the rest of his life.
Did you notice how how many times I said chemo in there?
Next, Michael was scheduled to have brain surgery to insert an Ommaya reservoir. The purpose of the reservoir is to put a ‘catheter’ into the brain cavity so that they could inject chemo directly into his brain//cerebral spinal fluid every week. Why? Because his lumbar punctures were difficult and painful procedures to endure and they got harder week after week.
We researched treatment options and nothing was a walk in the park. Nothing was a cure. There was no proof that treatment would make a huge impact in Michaels life span.
We made a decision.
We decided to pause all chemotherapy treatments.
Quality over quantity.
I hate those words. I get those words.
Making these kinds of decisions test you right to the core of your being. It shakes your belief system. It truly makes you think about every thing and by everything, I mean everything.
Last week, we went on a road trip. We played cards. Looked at the water. We didn’t think about tomorrow. We thought about today.
We don’t know the answer to that question just yet.
Originally, when we sat in the hospital and listened to the Doctors words, shock superseded reality. How could we grasp the gravity of a terminal diagnosis? I’m not sure we ever will.
My heart and my mind will never accept it. How can it? How can you accept that the love of your life will die? It’s unfathomable. Michael is only 55 years old. He is my soulmate. My everything.
It’s the little things. The way he holds my hand. How he looks at me. How he has loved me so very much for 20 years. He truly is one of the most beautiful souls that I have ever known. He’s so easy to love. I never want it to end. I can’t imagine what life would be like without him.
Will I ever be enough for my children? I can’t possibly be.
Like a cheating lover, I sometimes steal moments away and quietly call my friends and family. Talking about it helps. Sort of. Often times, I can’t even grasp the gravity of words that come out of my own mouth. I feel like I’m standing in someone else’s body. Surely, this must be someone else’s problem.
How can it be real? How can life unravel right before your eyes?
I swear, the heartbreak is palpable for our children. How can children possibly grasp that they will lose their beautiful sweet Dad? It’s not fair. What about their weddings? What about him being a Grandaddy to their kids? How will they live without ever seeing him again?
He’s their foundation.
How can we even begin to help them through the saddening journey of slowly saying goodbye? Is there even a way? There are no roadmaps for that. There is no easy way. There are no answers. No quick fixes.
Selfishly, I worry that my life will be over. Just like that.
Everything I have ever known and loved with Michael will be abruptly gone.
I worry that I will have plenty of people to do things with, but nobody to do nothing with. I’m overwhelmed by the thought of the loneliness that I’ll feel. Our home, our lives, our everything will be left with a giant hole. The most important part of the puzzle will be missing. Broken. Impossible to put back together. Forever changed.
How can I trust that everything will be okay?
I’ve tried to rage my battles against cancer. I’ve tried to win this war. I’ve tried to save my loved ones in their cancer journey. While we have made the best of the journey, cancer still took them. Cancer is such an asshole. It makes me feel hopeless sometimes. I’m tired.
I want to feel like I’m one fierce lady. Like I’m grace under fire. Like I got this. I don’t.
As much as I hate to say it, I know that I’m mourning the loss of future memories.
Mostly, we could all do without the change. There are gentler ways to learn about life. We have always been thankful for good days and bad days, just as long as we kept having days. That was good enough for us.
We all know that life is worth it. We all know we should be fighting for our dreams. We all know that anything is possible. Right now, I’m in such deep overwhelm, I can’t imagine that anything is possible. We need a miracle.
Yes we have hope. Yes we live our lives healthy, full of love, surrounded by fresh air and clean living. Yes, we will never ever give up. Yes, we have a positive attitude, every single day. Except maybe today, when I am scared shitless. xo Will all of that be enough?
Michael doesn’t have a bucket list, but his fucket list is a mile long.
We just want to travel, spend time with friends & family and love on them. Love on them hard.
As for the blog… as strange as this may sound.. it will continue. I don’t want to let it go. My blog has always been a mix of life, love and laughs mixed with DIY and design… and this will be no exception.
Cancer is not going to hold the keys to our kingdom.
We are going to continue to live life large and share it with you.
I’ll continue to share my real life stories, projects, inspired design spaces, DIY’s and home ideas …because this blog is therapy for me (and maybe you too?)
Maybe, in some small way, this can teach all of us how to behave in the face of sheer terror and uncertainty.
PSS. I love you. That is all.
Together, we got this.
Keep shining your love light,
Video edited & created by Jessica Allossery from The Lovely Indie xo <– I love that gal.